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hi Thierry

My genetic specialist at the Royal Marsden hospital in London is trying to set up a clinical trial involving full body MRI. The ethics comittee still need to pass it but once they do I have already been accepted onto it. I know my Genetisist works very closely with doctors in France so perhaps this MRI trail is a joint venture.

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Hi Sue

THank you for all the information you shared. My famil also has quite a chequred history of cancer. We found out about LFS about 4 yrs ago. I am still free of cancer, but unfortunately my 38 yr old brother died and my 6 yr old son has had cancer.

My immediate family is cared for at The John Radcliffe Hospital, Oxford. I have 4 children. My 6 yr old was tested for LF after his diagnosis with a Rhabdomyosarcom. He is possitive. However my other 3 children are purely treated “as if they have LF” Every year they recieve a full physical examination by the consultant oncologist and abdominal ultrasound every year to check for adrenocortical cancer. The age of my children are 11, 9, 6, 2. My eldest son is also being offered annual skin examination as of this July.

I have been talking to our oncologist and genetisist about increasing the survelliance to every 6 months.
If I remember rightly there is a Dr(Prof ?) Evans who is at Birmingham who spoke at the LF conference which took place a few months ago. His main speciality is breast Cancer, but he is also a leading expert on LFS in this country. It may be worth you trying to contact him to get his support and help in getting your children properly cared for. I am sure I have found his work email on line before.

Thank you for sharing your story. There are so few of us that each time I hear of another LF family, I feel like my family has grown. I hope your husband returns to good health again soon. Do keep us updated on his progress.

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Pan, would it be worth me starting a new discussion to mention about Proton Therapy and to talk about my surveillance program?

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Thank you pennysophia. I am already VERY pleased that your uncle decided to set this support forum up. Once the news gets around about it, hopefully we will get a few more members (not that we really want that, but you know what I mean).

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Hi Karen

I am new to this group, although I have known I have had the LF gene for over 4 yrs now. I too have had not cancers so far. I am 39. However like you, my brother was diagnosed with a soft tissue sarcoma in his eosphagus which unfortunately killed him within 6 weeks.

I am also seen by the genetics team at the Royal Marsden – Prof Ros Eeles. They have been extremely helpful to me over the years.

In terms of screening, I recieve MRI breast scans on the NHS once a year (please DO NOT have MAMOGRAMS – they are very dangerous for LF sufferers). I also receive annual skin assessment, 2/3 yrly colonoscopies, annual bronchoscopy, and 2/3 yrly endoscopy. IT is ALL done on the NHS.

Saying all that, I am very aware that the best form of monitoring is that as individuals we remain very aware of any changes in our bodies and have a VERY LOW TOLERANCE to visiting the doctor. I have a fantastic GP who is very good at referring me to specialists.

I hope this can be of some help to you. I too have been considering the option of mastectomy, which again the NHS would perform and provide restructuring too…. however that feels an enormous step to take, so for me the jury is still out on that one.

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